About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
The #krabbeconnect Hero page was created for individuals living and no longer living with Krabbe disease.
This page helps others understand the impact of the disease, educates healthcare professionals and companies on the numerous lives affected by Krabbe disease, and provides a place of remembrance.
At KrabbeConnect we never want to forget about any loved one diagnosed with Krabbe disease and gone before we could #curekrabbe.
Click the image to add your hero or to update the image of your hero today! ... See MoreSee Less
Krabbe Disease Heroes - KrabbeConnect
krabbeconnect.org
The KrabbeConnect Hero page was created for individuals living and no longer living with Krabbe disease. This page helps others to understand the impact of the disease, helps educate healthcare profes...0 CommentsComment on Facebook
Happy Monday! Supporters, look how you helped! We hope you feel all the warm feelings as this happened because of YOU!
If you have any resources to share with #krabbeconnect, please text the word "krabbe" to the number 707070 to make a donation today.
#curekrabbre ... See MoreSee Less
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Another equipment donation! Equipment will be issued on a first come first serve basis.
#krabbeconnect
#curekrabbecurekrabbe ... See MoreSee Less
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We are grateful for any year-end donations to help us expand our efforts in #NewbornScreening. Thank you for your continued commitment to #krabbeconnect! ... See MoreSee Less
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Check out this holiday list for kiddos with complex medical needs. Thank you Rare Parenting for this list!
#curekrabbeCheck out or new #GIFTGUIDE for switch adapted toys!! See it here: rareparenting.com/switch-adapted-toys-kids/ #SLP ... See MoreSee Less
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#thankyou - we have many families we were able to help this year through our support programs because of our supporters - YOU. We invite you to learn how we support families navigating #KrabbeDisease -https://bit.ly/krabbeassistance ... See MoreSee Less
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Thank you krabbeconnect for the help we received. Our family is going to enjoy our holidays with a little less stress this year. We hope many other families out there can feel this same this year as well.